AN in San Antonio trying to decide on treatment options

[JulieW4]

This will be a long post but I hope everyone will take the time to read this.  I found these forums about a month ago and have gained alot by reading them. 

Here is the background on my AN -
 
I started losing my hearing in 1995 and saw an ENT because of the hearing loss.  After looking at the results of my hearing test he recommended that I have a MRI done because he suspected an AN.  The MRI results came back unremarkable and did not show a tumor.  I talked with an audiologist friend of mine and she recommended that I see a otologist/neurologist that she said was one of the best in the city.  I took him my MRI films and he also said that the MRI was normal.  He diagnosed my 30% hearing loss in 1995 was caused by hydrops (increased fluid in the inner ear).  Then 4 years later I had complete hearing loss and the diagnosis was the same.  In April I started having episodes of facial paralysis/bells palsey type symptoms and made an appointment with The Ear Medical Group based on the recommendation of a friends who's son had SSD and had recently had the BAHA which he loved.  Dr. Syms ordered another MRI and 13 years later my AN is discovered.  It is believed that it began growing in the cochlea, which is rare and is now growing in/around my facial nerve.  After talking with the neurosurgeon I decided on surgery to remove my AN.  It is scheduled for June 30th.  But now my husband wants me to research GK because of his fear of surgery.  We have an appt. with the GK doc tomorrow (Wednesday).  My gut reaction is to go with surgery because I do not have to worry about hearing preservation and I just want it out and since it seems to be a "unique" tumor since it was not discovered in 1995 and the growth pattern is different than usual.  Even though I do understand that AN are all unique and different and the word normal does not really apply to AN's

I am open to having GK after reading several posts here and after I talk with the doctor about it.  But I obviously want to chose what I think is best for me.

I am looking for support and information any of you can share.  Anyone else out there have an AN missed and discovered later? 

Thanks in advance for your support and wisdom.

Julie

[Kaybo]

Julie~

First of all I am just so excited to see a fellow Texan!    and that we are going to be in San Antonio in August so maybe we can get together!!  OK, enough about my excitement...I am sorry that you have an AN and that you have had on-going problems for so long and no diagnosis - I'm sure that HAD to be frustrating!!  How big is your tumor?  I think that the most important thing to remember is that YOU have to be comfortable with your choice of treatment.  If you have been reading on this board, then you know that we all stress that.  That aside, there are many more things that "can" happen after surgery than just the deaf issue (SSD) and you need to take all of it into account.  If you would like to talk, please PM (on left) me your phone number - sometimes it helps just to talk to someone that has been there!

K

[leapyrtwins]

Julie -

ANs are missed and/or misdiagnosed all the time.  Sad, but true 

I hope you don't think I'm being rude here, but the AN belongs to you and the choice of how to treat it also belongs to you - with the doctor's input, of course.  Not to belittle your husband or his concern for you, but you need to do what you are comfortable with - and what you think is best for YOU.

AN treatment is a very personal choice and what is right for one patient isn't necessarily right for another.  I had the choice of radiation or surgery and chose surgery for lots of reasons, but one of them was because I wanted the AN out of my head.  I'm also a very black & white kind of person and I couldn't imagine watching and waiting or having radiation and hoping my tumor would "die".  But that's just me and I'm a bit of a control freak  - not everyone feels this way.

I am not at all advocating surgery or telling you that radiation is not a good choice.  But IMO while you should certainly consider your husband's concerns, in the end it's your tumor and your head.

Best of luck,

Jan

[JulieW4]

Jan,

I completely and wholeheartedly agree with you about this being my decision.  I am seeing the GK doctor to please my husband and overall get more info.  My husband unfortunately is looking at this from more a financial angle then medical.  I think he believes that GK is less expensive and that I will miss less work than looking at what is best for me medically. 

Thanks for reinforcing what I already know is true is that this is my decision based on what I believe is best for me and no one else.

Julie

[er]

Julie W4

It is your choice. I had surgery and was back to work in 3 weeks. 4 hours was my limit. I did get fatigue a lot but it help me feel like I was improving. Money, well insurance played for everything except for 3000. My co pay. So it depends on your insurance.
I hope this helps some.
eve

[Boppie]

Julie, I agree it must be your own decision.  But research might allay fears you might have for either treatment method. 

Perhaps someone here will relate their own story about radiation treatment for an AN which originated in the cochlea.  It does seem surprising that you were tested several times beginning in 1995 and that the tumor appears now.  What size it is now? 

If it is still very small perhaps you have time yet to continue research. 

You have perhaps read that some swelling occurs after radiation.  But swelling is usually well tolerated.  You would only need to watch and wait on the tumor to die and spare yourself a surgery.  I am trying to be fair for your husband's feelings.  But I would not choose one treatment over the other based on cost.  I am assuming you have insurance that covers treatment after an upfront copay.

I am happy I had a surgical removal of my AN but if it ever grows back from a scrap of a cell I would probably seek radiation treatment for it.  FSR technology improves every year.   

[leapyrtwins]

Julie -

I totally understand and I'm glad you didn't think my advice was too harsh 

As for returning to work post op.  Although it's definitely a longer period than with radiation, everyone's experience is different.  A lot depends on you and your rate of recovery.  The type of work you do also has something to do with it.  My doc told me that post op recovery is usually 6 weeks and that my major "factor" would be fatigue.  I returned to work part-time 2 weeks post op, but I have a desk job - not a lot of strenuous stuff involved.  My doctor was absolutely right though, the fatigue was phenomenal. 

As far as cost goes, as Eve said, a lot depends on your insurance company.  My surgery cost about $100,000 but I paid $0 because my doctors and the hospital were in my network.  I have a $400 in-network deductible, but paid that for my diagnostic MRI.  I don't know the cost of GK, but I'd imagine it isn't cheap.

Jan

[JulieW4]

I earn money many different ways.  Two ways is by waitressing which obviously needs a lot of energy.  I am also a doula, which is a professional labor support person for couples having babies.  I have been teaching childbirth class for 17 years.  My doula job is also taxing since I can be called to duty at 2:00 in the morning and on the job for many hours.  Childbirth is not usually a short process.  So my earning potential is immediately effected with surgery.  Yes, we do have insurance which is good.  I only recieved one MRI in 1995, I wished I would of had another one when I went from 30% hearing loss to complete hearing loss.  The AN probably would of been detected the second time.  I have not been able to find out the size of the tumor yet.  The doctor at the Ear Medical Group puts it in the small category.  I am waiting to hear from the radiologist to find out what the estimated measurement of the tumor is.  Thanks for all that has responded. 

[Jim Scott]

Hi, Julia:

I'm sorry you're an apparent victim of missed diagnosis, but, as Jan stated, unfortunately, this is fairly common.  Now that you've been properly diagnosed, your focus has to be on what to do. 

You indicated that you favor surgery but have a few qualms about the recovery period, post-op complications and so on.  Everyone has these concern, Julie, so you're perfectly normal in that regard.  Frankly, whether you ultimately choose surgery or radiation, the outcome simply cannot be guaranteed.  Radiation is quite effective and obviously poses fewer chances for complications (CSF leaks, infections, etc) but has risks of it's own, including swelling.  Radiation is a very attractive option but it is not a panacea.  If it were, no one would ever choose surgery for an Acoustic Neuroma treatment.  However, many do.  I did, although it wasn't really a choice, because upon my diagnosis, my AN was found to be far too large to be safely radiated.  Instead, I had surgery to debulk the AN, followed a few months later by FSR treatments to kill the thing.  The results have been excellent, so far (see my 'signature' at the bottom of this post).  Cost shouldn't be a major factor if you carry decent medical insurance.  The general consensus is that AN surgery costs about $100,000. (hospital & doctor) and radiation about $60,000. to $80,000.  These are 'ballpark' figures, of course.  My surgery ran $100,000. My health Insurance (Blue Cross) paid all but a few thousand dollars of that cost. 

I have to concur with the opinion that whatever you do (surgery or radiation) has to be your decision, not unduly influenced by husband, friends, doctors, insurance companies or even well-intentioned folks that respond to your message on this forum.  I think that has been established by now so I won't belabor the point, which is glaringly obvious, anyway. 

Surgical recovery is generally stated as six weeks but many recover much faster.  With my doctor's permission, I was driving and gallivanting about within two weeks of my release from the hospital and I had almost zero post-op complications.  My subsequent radiation treatments (FSR) were painless and boring (25 minutes per session, 5 days a week for five weeks).  Although I sometimes joke about growing a third eye after the radiation, I actually suffered no ill effects from the treatments and drove myself to and from each one, a 60-mile round trip. 

Again, the final treatment decision will remain yours, alone, Julie.  However, if feasible, out-patient, non-invasive radiation may be the more efficient choice based on your need to earn a living doing physically demanding work.  Conversely, surgery, while having a longer recovery period, removes the tumor and reduces - but does not eliminate - the risk of re-growth.

Obviously, you have a lot to think about.  I trust you'll do the necessary research - this website is a valuable resource - and have more than one doctor consultation before making a final treatment decision.  We wish you all the best and stand ready to explain, inform, advise and support you as you venture down this road that constitutes having a benign but problematic tumor in your head known as an Acoustic Neuroma. 

Jim      

[fbarbera]

Julia, 

How large is your AN?  I thought I would chime in here with a pro-radiation point of view.  When it comes to this condition, my own opinion is that it is critical for everyone to research both options -- surgery and radiation -- very diligently and with an open mind, trying not to draw conclusions too quickly.  Although the temptation to just extract the tumor can be strong on an emotional level, it is important to take into account other considerations.  For example, the risk of facial nerve damage is generally negligible in radiation but can be quite significant with surgery, depending on the size and location of your tumor.  Since you are having some facial symptoms now, this could signal that there is an increased risk of damage to the facial nerve in surgery.  I'm not sure but it is something to consider and speak to a neurosurgeon experienced in radiation about (surgeons will be biased in favor of surgery).  In my own research, I generally found that post-treatment quality of life (on average -- not in all cases) was better among those treated with radiation rather than surgery.  I encourage you to spend a time on this forum and to contact as many people as possible who have been treated with surgery and with radiation.  Speak to several doctors.  The desire to just get rid of the tumor is a strong one, but unfortunately, the effects of the tumor do not vanish after surgery, just as they do vanish after radiation.  In both treatment modes, there tend to be lingering effects and the question for you is which one will have the least impact on your quality of life after treatment. 

Good luck and be well.

Francesco   

[JulieW4]

I now know the size of my AN, just got the report from radiologist.  It is 2.7mm X 3.7mm.  I had a good talk with my neurosurgeon today.  He is completely understanding that I may postpone or cancel surgery so I can continue my research on radiation.  He is sending my MRI films to Dr. Jason Sheehan in Virginia to review for GK.  I also contacted the imaging center and I got my scans on a disk and I plan on sending that to Dr. Chang at Stanford.  My otolargyngologist also recommended another GK doc here in San Antonio and some doctors at the University of Pittsburgh Medical Center.  I will probably try to contact both of those recommendation.  I also need to see what my insurance will cover and proceed with this all consuming, stress inducing and anxiety provoking decision making process.  The other good news is that my husband feels much better about the surgery option if I decide to go that route.  So thanks again to all who have replied, your wisdom has been incredible.

If anyone has any experience with Dr. Sheehan in Virginia or the docs at the University of Pittsburgh I would love to hear any info you have to share.  Thanks again. 

Julie

[macintosh]

Hi JulieW4--

The good news is that's a very small AN, so it should be treatable whichever way you choose, and you can take as long as you like to look into things.

I'm enclosing the website for U. Pitt, which is loaded with info. Pitt is one of the most experienced centers for GK in the country, and Sheehan at Virginia is the chief editor of the Journal of Neurosurgery, so he's also at the top of the profession. He had an interesting overview on AN treatment in the Journal of Neurosurgery in Nov. of 2006. I will also include a url for that article.

http://www.acousticneuroma.neurosurgery.pitt.edu/

http://thejns.org/doi/full/10.3171/jns.2006.105.5.655

Good luck, and I hope things turn out as well for you as they have for many of us who have been through this,

Mac

[leapyrtwins]

Julie -

as you've certainly discovered making a treatment decision is extremely hard.  But it sounds like you are definitely on the right path.  The small size of your AN should mean you are an excellent candidate for radation if that is the choice you make. 

Good luck with your continuing research.  Whatever choice you ultimately make, please know that we are all here to support you in any way that we can.

Hang in there,

Jan